1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Annakey

    Annakey Registered User

    Oct 26, 2018
    26
    Female
    how does one deal with a partner with Alzheimer's who refuses to acknowledge that he has anything more serious than a 'bit forgetful'?

    Everything I read seems to assume the sufferer acknowledges the disease and wants to help themselves and their carer. We visit the Dementia Nurse every six months, and it is a struggle to get him to even do that, but I can't imagine he will ever accept respite care or home carers or even being financially assessed .

    Anyone got any ideas what I should do? Thank you for your help.
     
  2. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,473
    Hi, sorry I can't help as my OH is exactly the same, I managed to get him to day care once the next week he refused to go.:(
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    Firstly, welcome to the forum @Annakey.

    The issues you mention are common so you may get a lot of replies to your question.

    Often people resort to 'love lies' to get their person with dementia to co-operate with visits to clinics etc.

    There is a lot of general information that you may find useful in the Publications list that you can find with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    On the subject of general communication, there is a thread with a lot of useful hints that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

    Overall, although I don't know if it will help you, I get a lot of benefit from knowing that the person isn't being stubborn or in denial as such. The brain damage is such that they can no longer understand or remember that anything is wrong with themselves. Trying to explain or reason about these things is, essentially, a waste of time as they wouldn't have a diagnosis if this was capable of working. I find that that knowledge helps me to accept my situation when caring for my wife and being confronted with these challenges.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  4. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,284
    Female
    South of the Border

    This is one of the biggest bug bears with regard to dementia. It drives me mad when coupled with hosting. What should you, what can you do? Are Social Services involved? Does your OH still drive? Once a couple of things like this in place, it is just possible to reason along the lines of "If there was not a significant problem Social Services would not be involved, or you would not have lost your license"

    I find that my OH knows he has dementia, but does not thing he has any symptoms!

    It is a loaded dice, my dear, and one of the hardest of things to work with. I sometimes wish I had a copy of the brain scan to show him where the problems are!

    Good Luck with this one, and keep posting, we can only try to help each other.
     
  5. chris53

    chris53 Registered User

    Nov 9, 2009
    2,930
    London
    Good afternoon Annakey, a warm welcome to you to Talking Point...a big dilemma as their world becomes not the same as ours,with both of our mums this became very obvious that whatever they said was law...the only way we could get more practical medical help was to summarise the problems that were becoming more noticeable and see their doctors to really..get the ball rolling... even if this has already been done at the "think there is something wrong stage" its just you putting on record the day to day difficulties both you and your partner are facing,so it may help to see your partners GP again to totally update,good idea would be to write everything down and get it put on record.Regarding the difficulty with your visits to the dementia nurse, they will do home visits should you let your doctor know what a stuggle it is to get there,this may be more beneficial for both of you, for the nurse to see your partner in their own home.
    I hope that you get more help needed now at this early stage.
    Please keep posting and take care.
     
  6. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    When I tried to bring the issue up with my wife at first it ended in tears, later on this became aggression so I gave up.
    I figured out pretty early on that appearing to be in denial too meant I wasn't driving a wedge between us because in her head there was noting wrong with her and me saying there was she found very hurtful.
    When we I memory clinic I told her I had to go to the clinic then promise we'd go somewhere nice afterwards. The people at the clinic are well used to handling people in denial so I could appear to side with my wife and they understood this as if I was sat there agreeing with the doctors I'd try and stay onside with her.
    I think one of the biggest mistakes is let the diagnosis come between you when you really need to be working together.
    In the words of the song 2sometimes it's best when you say nothing at all".
    K
     
  7. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    922
    This is very common sadly. My MIL never accepted there was anything wrong with her. As far as she was concerned she never needed any help. There is a medical word for it that other posters can supply I'm sure. Even at the end of her life when she could do virtually nothing for herself she never understood she couldn't walk ,or use the toilet properly. You will have to develop strategies to make decisions for him because if you wait for him to accept he has a problem you will wait forever.
     
  8. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,061
    Toronto, Canada
    We never were able to tell my mother she had Alzheimer's but she grudgingly accepted that her memory "wasn't what it used to be".
     
  9. Annakey

    Annakey Registered User

    Oct 26, 2018
    26
    Female
    Thank you everyone. I shall read and digest your responses. I"m very grateful to be here.
     
  10. kindred

    kindred Registered User

    Apr 8, 2018
    2,145
    Goodness gracious me. I wonder what you are reading? Only rarely will they acknowledge the disease and as for wanting to help themselves and the carer, that is fantasy!! It seems to me that co-operation is a very rare thing, and certainly my OH did everything possible to subvert anything I did or put in place to help him. I got very defeated ... and I guess this is behind my lingering feeling that I am wrong all the time! warmest, Kindred.
     
  11. FRED24

    FRED24 Registered User

    Oct 30, 2018
    10
    It really helps to read all the reply's makes one feel not alonethanks
     
  12. FRED24

    FRED24 Registered User

    Oct 30, 2018
    10
    What I would like to know do they ever except help with out them thinking its all in our minds people who actually are aware of the problem them selves helps a lot
     
  13. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,630
    North West
    In the earlier stages of the disease many people are aware of the problems it is causing and will accept help.
    Even in the advanced stages some people accept help.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,885
    Female
    South coast
    My mum never believed that she had Alzheimers (I used to refer to her memory problems) and she never accepted any help either. She sacked her cleaner (because she was, apparently, stealing) and would not let carers over her threshold! Unfortunately it took a crisis before she got the care she needed - she had a TIA and went from hospital to her care home. Surprisingly she settled in her care home and thrived there, which I would never have believed.
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    208
    It’s a ****** isn’t it! My wife has always maintained that she hasn’t got vascular dementia. In fact she walked out on the consultant when we were told back in 2015 and it’s been one lie after another on my part so I can see the relevant clinics and teams to get help for me. She’s been refused her driving licence (she doesn’t know this as I’ve intercepted the letter) and I dread the day when she asks if she can drive the car as her name as driver on the insurance has been taken off as well. I just hope she’s at the stage where all this is meaningless anyway but that anticipates a worse condition than now and I don’t want that, so I can’t win either way. As for assessment, I’m trying to get a carers assessment done but they want her consent. How do I get round that one? At a later stage her consent will be meaningless anyway so I’m stuck as you are. Keep in touch as I will and perhaps we can come up with something that may help. Best wishes, Dutchman.
     
  17. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    462
    North West
    When OH was first diagnosed I avoided any tv programmes dealing with dementia thinking it would upset him but I now realise he does not know what he has and when we watch this type of programme he will voice sympathy for the patient. He does admit having a poor memory. Nothing to be gained trying to make a PWD acknowledge their situation. Of course we do have to stop them causing harm to themselves or others and that is where love lies or distraction come in.
     
  18. Baker17

    Baker17 Registered User

    Mar 9, 2016
    249
    I had a Carers assessment and no one asked for my PWD’s consent
     
  19. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,834
    Nottinghamshire
    Mine neither. How can this be a reasonable request?
     
  20. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,741
    Salford
    I guess it depends if Dutchman is in Holland or not, the rules may be different there, my wife refused an assessment but they did one anyway as I lead her to believe the assessment was for me, in fact it was for both of us.
    K
     

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